Compassion Over Calories: Rethinking Food, Body, And Medicine – With Dr. Jennifer Gaudiani

Welcome, Framing The Conversation

SPEAKER_00
0:00

Eating
disorders
don't
always
look
the
way
we
think
they
do.
For
people
living
with
chronic
illness
who
are
neurodivergent,
the
relationship
with
food,
body
image,
and
even
hunger
cues
can
be
completely
different
and
often
overlooked
by
doctors.
Today
on
Indobattery,
I'm
joined
by
Dr.
Jennifer
Gardiani,
one
of
the
leading
experts
in
the
world
on
eating
disorders
and
the
author
of
Sick
Enough.
We're
exploring
how
disordered
eating
can
hide
behind
medical
conditions,
why
neurodivergence
changes
the
picture,
and
what
recovery
can
realistically
look
like
when
illness
is
a
part
of
your
story.
This
conversation
is
filled
with
science,
compassion,
and
hope.
And
I
promise
you
don't
want
to
miss
it.
So
stick
around.
Welcome
to
Indobattery,
where
I
share
my
journey
with
endometriosis
and
chronic
illness
while
learning
and
growing
along
the
way.
This
podcast
is
not
a
substitute
for
medical
advice,
but
a
supportive
space
to
provide
community
and
valuable
information
so
you
never
have
to
face
this
journey
alone.
We
embrace
a
range
of
perspectives
that
may
not
always
align
with
our
own,
believing
that
open
dialogue
helps
us
grow
and
gain
new
tools.
Join
me
as
I
share
stories
of
strength,
resilience,
and
hope,
from
personal
experiences
to
expert
insights.
I'm
your
host,
Alana,
and
this
is
Indobattery,
charging
our
lives
when
Indometriosis
trains
us.
Welcome
back
to
Indobattery.
Grab
your
cup
of
coffee
or
your
cup
of
tea
and
join
me
at
the
table.
Today
I
am
honored
to
welcome
Dr.
Jennifer
Gadiani
to
the
podcast.
Dr.
G
is
an
international
medicine
physician
and
one
of
the
world's
leading
experts
on
eating
disorders.
She's
the
founder
of
the
Gadiani
Clinic
in
Denver,
where
she
and
her
team
provide
compassionate,
comprehensive
care
to
people
struggling
with
eating
disorders
and
their
medical
complications.
She's
a
certified
eating
disorder
specialist,
a
fellow
of
the
Academy
for
Eating
Disorders,
and
the
author
of
Sick
and
Death,
a
Guide
to
Medical
Complications
of
Eating
Disorders,
a
groundbreaking
book
that
changed
how
patients,
families,
and
even
other
doctors
understand
this
illness.
What
makes
Dr.
G's
work
especially
powerful
is
her
focus
on
populations
often
overlooked,
people
living
with
chronic
illness,
neurodivergence,
and
complex
medical
needs.
She
brings
not
only
world-class
expertise,
but
also
deep
compassion,
and
I
couldn't
think
of
anyone
better
to
help
us
explore
today's
conversation.
Please
help
me
in
welcoming
Dr.
Jennifer
Gattiani
to
the
table.
Thank
you,
Dr.
G,
so
much
for
sitting
down
with
me
today.
I
have
been
looking
forward
to
this
conversation
just

Dr. G’s Background And Care Philosophy

SPEAKER_00
2:46

to
spend
time
with
you.
So
thank
you
for
taking
the
time.

SPEAKER_01
2:49

I've
been
so
excited
to
hang
out
with
you
as
well.
Ever
since
we
were
connected,
I
was
like,
I
need
to
learn
more
about
this
world.
And
this
is
the
woman
to
teach
me.

SPEAKER_00
2:56

Oh,
I
don't
know.
Well,
I'll
do
my
best.
I
can
teach
you
from
a
patient
perspective,
but
man,
and
that's
sometimes
valuable
when
you're
a
provider.
So
I
appreciate
you
just
taking
the
time
and
being
vulnerable
with
our
family
here
for
Indobattery.
But
I
also
want
to
just
put
this
out
there
that
if
you
struggle
with
disordered
eating
and
that's
a
trigger
for
you,
this
may
be
a
trigger.
So
this
may
be
a
time
to
reach
out
to
a
mental
health
provider
or
your
physician
if
you're
struggling
in
one
way
or
the
other.
So
I
just
want
to
put
that
little
bit
out
there.
We
are
going
to
talk
about
something
that
many
of
us
don't
think
of
as
something
that
we
deal
with,
but
probably
should
talk
more
about.
And
that
is
disordered
eating,
any
form
of
eating
challenges
when
it
comes
to
not
only
the
body,
but
the
brain
and
how
they
intersect.
And
you
are
the
expert
at
this.
So
I'm
thrilled
that
I
get
to
sit
down
and
talk
to
you
about
this.
This
is
something
that
I've
questions
for
for
a
long
time.
So
thank
you.

SPEAKER_01
3:54

Well,
I
hope
I
can
answer
them.
And
as
your
listeners
decide
if
this
is
the
right
episode
for
them
to
spend
their
time
and
their
precious
energy
on,
I
want
to
name
that
I
really
do
this
work
from
a
lens
that
is
autonomy
forward,
profoundly
compassionate
and
patient-centered,
absolutely
not
only
weight-inclusive,
but
fat
positive,
and
from
a
completely
non-diet
perspective.
So
my
hope
is,
if
anything,
your
beloved
listeners
who
do
struggle
with
these
will
find
this
to
be
a
warm
and
gentle
and
welcoming
experience
rather
than
being
scary.

SPEAKER_00
4:37

That's
my
hope.
And
I
think
you
will
accomplish
that
because
you're
so
good
at
communicating
such
a
sensitive
topic
for
so
many
of
us.
One
of
the
things
that
I
want
to
highlight
before
we
get
started
is
your
book
and
what
you
do
and
what
drew
you
to
write
this
book.
And
it
kind
of
probably
encompasses
quite
a
bit
of
what
we're
going
to
talk
about.
Can
you
give
us
a
background
on
what
you
do,
your
book,
why
you
wrote
it,
all
of
the
things?
I
would
love
to.

SPEAKER_01
5:06

Thank
you
so
much.
So
I'm
an
internal
medicine
physician
who
has
specialized
in
eating
disorders
and
medical
malnutrition
for
the
past
17
plus
years.
The
first
many
years
of
that
were
in
an
inpatient
medical
setting.
And
for
the
past
10
years,
I
have
my
own
outpatient
medical
clinic,
private
practice,
based
in
Denver,
Colorado,
but
my
wonderful
three
other
doctors
and
I
collectively
are
licensed
in
around
45
states.
And
so
we
see
folks
of
all
ages,
genders,
sizes,
shapes,
medical
conditions
from
all
around
the
US
when
medical
stuff
is
getting
in
the
way,
either
of
formal
eating
disorder
recovery,
or
if
it's
preventing
them
from
nourishing
their
bodies
in
ways
that
matter
to
them,
even
if
there's
not
an
eating
disorder
or
sort
of
body
dysmorphia
element
to
it
present.
And
so
I
love
this
work
so
much.
I
love
my
patients
so
much.
I
am
constantly
in
a
state
of
learning,
unlearning,
relearning
because
my
patients

Myths, Weight Stigma, And Medical Gaslighting

SPEAKER_01
6:20

bring
to
me
all
of
the
ways
in
which
they've
experienced
gaslighting
in
the
Western
medical
setting,
of
which
I
am,
you
know,
a
student
and
I'm
licensed
within
that
entire
setting.
The
ways
in
which
they've
been
gaslit,
experienced
medical
trauma,
been
misled,
ignored,
invisibilized,
and
silenced.
And
each
time
I
hear
of
examples
when
surely
perfectly
well-meaning
medical
providers
have
ultimately
harmed
them,
it's
an
opportunity
for
me
to
reflect
how
can
I
do
better?
How
can
this
clinic
do
better?
How
can
we
listen
so
lovingly
to
our
patients
and
reassure
them
that
they
are
the
expert
in
their
bodies?
Yes.
We're
just
the
expert
in
a
certain
set
of
subject
matter.
And
expert
does
not
mean
no
at
all.
It
means
you've
done
a
lot
of
reps
and
you're
really
keenly
interested
in
continuing
to
do
and
learn
more,
but
really
to
say
to
my
patient,
you
are
the
expert
in
you,
even
if
I
can't
measure
what
you
say
is
happening
in
your
body,
we're
just
gonna
go
from
the
place
of
that's
true
and
real,
and
I
wonder
how
I
might
be
able
to
help.
So
that's
the
framework
from
which
we
operate.
And
my
book
is
called
Sick
Enough:
A
Guide
to
the
Medical
Complications
of
Eating
Disorders.
I'm
so
delighted
that
the
second
edition
is
gonna
be
coming
out
December
8th.
And
the
first
edition
was
like
seven
years
ago.
I've
learned
so
much
in
the
last
seven
years.
And
I
really
wrote
this
updated
edition
for
patients,
their
loved
ones,
and
clinicians
who
really
want
to
understand
what
happens
in
a
body
when
it
doesn't
get
enough
to
eat
for
any
reason.
So
as
my
practice
has
gone
on,
and
I've
realized
how
many
folks
come
to
me
with
mast
cell
activation
syndrome
and
postural
orthostatic
tachycardia
syndrome
and
super
complicated
digestive
syndromes,
I
am
realizing
more
than
ever
that
there
are
a
lot
of
reasons
why
someone
might
end
up
in
a
tricky
relationship
with
food
and
their
body.

SPEAKER_00
8:33

Yeah.
When
you
think
about
your
patients
and
you
think
about
what
they've
heard
or
the
things
that
you
even
hear
other
providers
say,
what's
one
of
the
biggest
misconceptions
about
eating
disorders
that
you
wish
people
could
unlearn
like
right
away?

SPEAKER_01
8:51

Magic
wand,
number
one,
would
be
if
you're
not
underweight,
you
can't
have
an
eating
disorder.
The
truth
is
that
the
very
vast
majority,
probably
90
plus
percent,
of
people
with
formal
DSM
V
eating
disorders
are
not
visibly
emaciated
and
may
indeed
be
in
larger
bodies.
But
so
often,
when
that
wonderful
human
walks
through
the
doors
of
a
medical
clinic,
the
first
thing
that
they
experience
is
weight
stigma.

unknown
9:25

Yeah.

SPEAKER_01
9:26

And
indeed,
they
may
receive,
again,
well-intentioned,
but
quite
harmful
and
very
useless
recommendations
from
their
medical
provider
that
are
basically
like
prescribing
eating
disorder
behaviors.
Measure
your
food,
restrict
your
food,
restrict
what
you
eat,
all
the
things,
focus
on
your
weight.
All
of
those
things
turn
out
to
be
biologically
useless
and
futile
for
the
vast
majority
of
people
because
of
the
way
we
evolved
during
evolution
to
survive
starvation.
And
additionally,
really
psychologically
harmful.
And
I
would
say
if
I
had
a
magic
wand
for
a
second
wish,
it
would
be
that
medical
providers
would
have
the
time
and
the
curiosity
to
appreciate
that
a
huge
amount
of
what
humans
experience
in
their
symptoms
doesn't
come
with
a
medical
measurement.
And
the
problem
is
in
our
current
system,
as
so
many
of
your
listeners
will
probably
have
experienced,
doctors
are
really
quick
to
say,
therefore
it
doesn't
exist.
Or
therefore
I
can't
say
for
sure
this
is
the
problem,
and
I'm
uncomfortable
suggesting
solutions
for
it
because
I
don't
know
that
it
exists
in
the
first
place.
Right.
I
would
say
that
that
is
so,
so
painful
for
my
patients
for
a
million
reasons.
But
if
we're
looking
just
at
their
relationship
with
food,
so
much
of
what
we
do
in
our
clinic
boils
down
to
every
time
I
eat
in
a
way
that
seems
like
it
would
be
balanced,
sufficient,
and
regular
according
to
sort
of
the
best
sources
in
my
life
who
are
not
giving
me
diet
culture,
I
hurt.
And
so
when
you
hurt
after
you
nourish,
that's
negative
conditioning.
I
mean,
we
know
from
time
immemorial
that
if
something
hurts,
you're
gonna
avoid
it.
So
so
many
of
my
patients
come
to
this
uncomfortable
relationship
to
food
because
every
time
they
eat,
their
tummy
hurts
or
some
other
bad
symptoms
happen.
And
so
they
end
up
backing
off
and
backing
off
because
they're
just
mammals
who
don't
want
to
hurt.

unknown
11:41

Right.

SPEAKER_01
11:42

And
they
can
end
up
in
this
whole
other
world
of
malnutrition
with
or
without
underweight,
where
they
go
down
a
whole
new
rabbit
hole
where
again,
Western
medicine
doesn't
have
a
lot
to
offer
usually.

SPEAKER_00
11:55

Yeah.
I
find
that
this
is
especially
true
with
those
of
us
who
have
chronic
illness.
And
I
think
a
lot
of
us
deal
with
these

Pain After Eating And Malnutrition Loops

SPEAKER_00
12:05

compounding
factors,
right?
Because
we
not
only
don't
feel
good
when
we
eat
certain
foods,
but
then
on
top
of
that,
we
don't
like
the
way
our
body
looks
or
feels.
And
sometimes
that
we
don't
like
the
way
it
looks
because
of
the
way
it
feels,
right?
So
we
have
these
like
compounding
things
that
tend
to
just
creep
up
on
us
before
we
even
recognize
what's
going
on
in
our
bodies.
And
that's
why,
you
know,
I
really
wanted
to
talk
about
this
because
I
think
some
of
us
think,
well,
I
don't
have
any
complications
with
food
other
than
it
doesn't
agree
with
me.
I
think
it
goes
much,
much
deeper
than
that
on
a
much
deeper
scale
of
things.
And
so
that's
why
I
think
someone
with
endometriosis,
chronic
pain,
all
of
these
factors,
we
have
to
start
paying
attention
to
is
this
becoming
more
than
what
I
can
handle
on
my
own?
And
what
how
do
you
approach
your
patients
that
come
in
that
maybe
have
lived
through
this
experience?
So
many
of
them
have.

unknown
13:05

Yeah.

SPEAKER_01
13:06

For
a
variety
of
reasons.
And
you're
right,
bodies
can
also
look
really
different,
not
just
the
sort
of
the
experience
of
pain
or
inflammation,
but
when
you
see
your
tummy
super,
super
bloated
after
eating
what
you
intellectually
know
is
a
completely
reasonable
meal.
You
know,
maybe
everyone's
clothes,
but
particularly
women's
clothes,
are
not
designed
to
fit
comfortably
through
a
range
of
tummy
experiences.
I
mean,
this
is
one
of
the
ways
that
the
industry
sort
of
keeps
us
feeling
like
crap
about
our
bodies,
is,
you
know,
when
our
when
our
tummy
really,
really
puffs
out
after
we
eat
something
that
we
just
have
a
sensitivity
to,
and
your
pants
are
tight
and
you
can
barely
breathe,
you
don't
feel
good
and
you
want
to
avoid
that
feeling
in
the
future.
So,
you
know,
what
we
try
to
do
first
in
our
clinic
is
start
from
a
perspective
of
patient
goals
and
values.
Really
have
them
be
the
captain
of
the
ship
so
that
we
can
be
the
wind
in
their
sails.
And
try,
although
we
certainly
fail
at
this,
and
then
we
apologize
and
we
move
forward,
try
not
to
have
the
opinion,
we
know
everything,
we'll
take
care
of
you,
we
know
what
health
is
for
everybody.
Nonsense.
Health
and
the
experience
of
a
daily
life
lived
is
so
unique.
And
what
someone
wants
and
and
can
reasonably
hope
for
from
their
body
is
going
to
be
completely
individual.
So
what
we
might
say
is
tell
me
the
whole
story
of
your
body
and
food.
And
then
we
just
shut
up
and
listen.
I
want
to
know
everything
that
goes
on
in
your
body,
from
your
brain
fog
to
your
bloating,
to
your
pelvic
pain,
to
your
constipation,
to
your
diarrhea,
everything
that
happens
that
seems
to
relate
to
what
you
take
in.
And
then
we
can
start
to
really
thoughtfully
listen
for
pattern
recognition
that
we've
come
to
appreciate
over
time
to
try
to
figure
out
is
this
person's
symptoms
coming
from,
for
instance,
the
very
knowable
ways
that
bodies
that
haven't
gotten
enough
nutrition
in
a
long
time
react.
Again,
when
I
say
malnutrition
here,
everyone
can
just
assume
that
I
mean
in
any
body
size.
So,
for
instance,
if
someone
hasn't
been
eating
enough
for
a
long
time,
they
may
get
really
slowed
digestion.
They
may
get
something
called
gastroparesis,
where
their
stomach
doesn't
empty
out
swiftly
enough.
They
may
get
bloating
and
constipation
as
their
guts
slow
their
wriggle.
And
that's
because
the
body
is
doing
what
it's
been
doing
for
millennia
to
protect
us
from
malnutrition.
It's
just
slowing
down
caloric
burn.
But
just
from
the
malnutrition
itself,
that
can
cause
fullness,
nausea,
vomiting,
poor
hunger
cues,
that
distention
that
keeps
you
from
eating.
So
we
think
first,
is
this
related
to
malnutrition?
And
we've
got
a
bunch
of
little
ways
that
we
can
help
people
gently
boost
their
nutrition
in
ways
that
honor
what
they
can
eat
or
not,
as
well
as
sometimes
use
medicines
to
help
work
on
that.
Another
sort
of
classic
malnutrition
associated
finding
here
would
be,
for
instance,
small
intestinal
bacterial
overgrowth
or
SIBO,
where
when
you
don't
eat
enough
and
your
gut's
slow,
the
bacteria
from
your
colon
crawl
into
your
small
intestine
where
they
shouldn't
be,
set
up
shop,
start
to
ferment
your
food
too
early,
and
can
cause
a
huge
amount
of
inflammation,
pain,
and
bloating
through
your
whole
body.
So
those
are
malnutrition
ones.
Then
we
think
about
a
category
of
what
are
the
Venn
diagrams
that
typically
can
overlap
what
this
individual
knows
about
themselves
already?
So
we
might
have
somebody
come
to
us
and
say,
I
know
I
have
really
complex
digestive
issues
and
I
have
POTS,
postural
orthostatic
tachycardia
syndrome.
And
then
we
might
say,
okay,
having
listened
to
everything
you
just
talked
about,
I
think
you
might
also
have
undiagnosed
mast
cell
activation
syndrome
or
MCAS.
And
when
that
gets
opened
up,
we
talk
through
what
that
means
and
how
that
might
impact
things.
And
if
it
seems
like
they
have
it,
we
get
to
start
treating
it.
So
again,
food
becomes
less
of
an
enemy
and
more
again
of
a
friend
or
at
least
a
neutral
party.

SPEAKER_00
17:23

What
would
you

Patient-Led Goals And Pattern Recognition

SPEAKER_00
17:25

quantify
as
an
eating
disordered
or
disordered
eating?
Because
I
think
that
maybe
we
hear
these
things
and
we
think,
oh,
maybe
it's
just
a
challenging
relationship
with
food.
But
there,
there
is
some
intersection
there.
Can
you
kind
of
explain
that
to
us
and
break
it
down
a
little
bit
so
we
can
understand
it
a
little
better?

SPEAKER_01
17:43

Absolutely.
I
will
try
because
there,
well,
there
are
formal
criteria
for
eating
disorders,
of
course.
The
notion
of
disordered
eating
is
very
nebulous.
And
we
have
to
contextualize
it
in
the
society
we
live
in,
which
is
so
diet
culture
focused.

SPEAKER_00
18:00

Yes.

SPEAKER_01
18:00

You
know,
I
mean,
everyone
is
talking
about
what
they're
no
longer
eating,
not
because
it
doesn't,
you
know,
sit
well
with
their
tummy
or
their
body,
but
because,
you
know,
they
think
it's
the
right
thing
to
do
to
avoid
inflammation.
I'm
not
eating
this,
I'm
not
eating
that,
I'm
eating
less
of
this,
I'm
only
eating
at
these
times
a
day.
I
mean,
this
is
so
normalized
and
typical
in
our
society
that
even
though
I,
as
a
very
health-privileged
physician
who
specializes
in
eating
disorders,
would
be
like,
no,
no,
no,
all
of
that
is
disordered
eating.
It's
so
broadly
found
that
people
might
be
like,
hey,
are
you
just
trying
to
pathologize
me
by
telling
me
I've
got
a
problem?
And
the
answer
is
I
want
to
be
far
gentler
than
that,
but
also
kind
of
come
back
to
really
good
science
about
what
truly
healthy
eating
is.
And
I
use
that
H-word
roll-roll
carefully,
um,
because
boy,
is
that
a
tricky
word.
What
I
would
say
is
that
if
there
aren't
physical
impediments
to
nourishing,
which
of
course
many
people
have,
and
many
of
your
listeners
have,
I
would
say
that
normal
eating
means
that
you
spend
relatively
little
brain
energy
on
what
did
I
just
eat
and
what
I'm
about
to
eat,
and
what
did
I
eat
yesterday
and
what
will
I
eat
tomorrow.
You
pretty
comfortably
can
listen
to
hunger
and
fullness
cues,
and
you
can
nourish
yourself
with
satisfying,
tasty
foods
in
a
mindful
way,
reasonably
consistently
throughout
the
day,
without
much
chatter
or
shame
or
fear
that
revolves
around
these
topics,
and
that
you
can
fuel
yourself
to
do
what
your
unique
body
wants
to
do
that
day.
I
would
say
that
is
sort
of
broadly
speaking
normal
eating.
And
therefore,
theoretically,
I
would
say
that
anything
outside
of
that
could
be
disordered.
That
doesn't
mean
judgment.
That
doesn't
mean
someone
with
severe
IBS,
irritable
bowel
syndrome,
who
has
to
avoid
a
bunch
of
foods
is
like,
oh,
you
have
disordered
eating
and
I'm
judging
you.
It
says,
gosh,
you
must
have
to
spend
a
lot
more
time
and
energy
on
how
to
fuel
yourself.
And
you
must
suffer
a
lot
more
than
other
people
when
they
can
just
bolt
down
a
sandwich
and
go
back
to
work,
and
you're
trying
to
figure
out
how
your
tummy's
gonna
do
that
day.
Eating
disorders,
of
course,
have
really
formal
criteria
in
the
diagnostic
and
statistical
manual
five
that
follow
certain
criteria.
But
I
think
the
focus
of
this
talk
is
about
folks
who
have
gotten
into
a
relationship
with
food
in
their
bodies,
whether
or
not,
again,
there's
body
image
stuff
involved,
which
let's
face
it,
if
you
were
human
on
the
planet,
probably
there's
some
body
image
stuff
involved
because
thin
privilege
is
so
powerful
in
our
culture.
But
what
I'd
like
to
talk
to
is
just
the
breadth
of
conditions
that
might
lead
somebody
to
have
to
spend
so
much
time
on
how
to
feed
themselves
and
how
to
deal
with
their
body's
reaction,
and
that
they're
not
alone,
they're
not
a
mystery,
and
they
can
feel
better.

SPEAKER_00
21:16

Yeah.
And
you
know,
another
added
component
to
this,
which
I
want
to
talk
about
because
a
lot
of
us
with
endometriosis,
mast
cell,
EDS,
all
of
these
other
things
also
are
neurodivergent,
which
plays
a
huge
role.
And
the
way
that
we
eat,
the
way
that
we
process
what
we
should
eat,
the
way
that
we
listen
to
our
hunger
cues.
I
mean,
I'm
speaking
from
experience
here
when
I
tell
you
my
husband
has
had
to
make
me
lunch
because
I
will
not
eat.
Not
because
I
I'm
like
being
thoughtful,
like
I
don't
want
to
eat.
It's
because
I
literally
get
in
a
zone
and
I
don't
eat.
I
don't
even
think
about
it.
I
don't
hear
my
body.
I
was
telling
my
trainer
the
other
day
when
we
were
talking
about
it,
I
was
like,
I
don't
actually
know

SIBO, Gastroparesis, And MCAS Links

SPEAKER_00
22:00

sometimes
even
when
my
body
is
in
pain
until
it
gets
to
a
breaking
point.
And
that's
that
like
neurodivergent
aspect
of
how
our
brains
are
wired.
It's
like
you
really
have
to
feel
the
burn
before
you
know
it's
burning,
you
know?
And
so
the
same
as
for
when
I'm
eating,
I
often
don't
hear
my
body
talking
to
me
and
telling
me,
you're
hungry,
you
need
to
stop,
you
need
to
eat.
And
sometimes
when
I
eat,
it's
like
a
bite
or
two
and
I'm
good.
But
that's
also
not
great,
right?
So
we
have
we
have
to
figure
out.
I'm
a
lazy
eater,
is
what
I
always
say.
I'm
a
lazy
eater.
I
do
it
out
of
necessity
a
lot
of
times.
I'd
rather
not
take
the
time
to
do
it
because
I
have
other
things
I'd
like
to
focus
on.
So
I
think
a
lot
of
us
find
ourselves
in
this
position.
When
you
have
patients
that
come
in
with
that
as
well,
how
do
you
walk
them
through
this?
And
what
are
some
signs
that
doctors
and
family
members
and
ourselves
can
pay
attention
to
as
this
being
some
sort
of
disordered
eating,
or
maybe
we
should
seek
help
for
that?

SPEAKER_01
23:01

I
love
this
question
so
much.
I
think
the
last
couple
of
years
have
really
humbled
me
as
I
have
learned
the
importance
of
neurodiversity
and
relationship
with
food.
It's
a
topic
I
just
adore
because
a
lot
of
the
time
it
has
been
ignored
or
it
has
been
under-addressed.
And
as
a
result,
folks
feel
like
they're
failures
of
the
system
when
in
fact
the
system
has
been
failing
them.
The
system
is
normed
around
neurotypicality.
And
the
truth
is,
so
many
people
who
have
struggles
with
food
do
have
some
form
of
neurodiversity.
It
could
be
at
the
formal
ADHD
or
autism
level,
and
it
could
also
be
at
a
sort
of
subclinical,
but
still
very
much
important
relationship
with
food
textures,
tastes,
scents,
colors,
the
feeling
of
fullness
in
one's
body.
The
people,
you
know,
for
me,
when
I
in
my
health
privilege,
when
I'm
satisfiedly
full
after
a
meal,
I
feel
good.
Other
people
who
have
absolutely
no,
you
know,
overwhelming
pathologic
drive
for
body
change
feel
terrible
when
they're
full.
Not
because
they
have
sort
of
an
eating
disorder
necessarily,
but
because
their
sensory
input
is
you've
just
done
something
yucky
and
dangerous.
And,
you
know,
guess
what?
That
can
certainly
end
up
leading
to
a
formal
eating
disorder.
So
there's
a
bunch
of
things
that
I
love
to
do
now
when
it
comes
to
patients
who
either
arrive
to
us
with
a
diagnosis
in
the
neurodiversity
realm
or
who
have
been
undiagnosed
their
whole
life.
And
I
really
love
to
ask
questions
about
all
of
the
stuff
you
just
talked
about.
How
do
you
feel
it
is
to
arrange
meal
planning?
How
do
you
do
planning
a
grocery
list?
What
is
it
like
for
you
to
come
to
a
meal
time
and
you're
focused
on
a
task?
How
do
you
do
when
you're
multitasking?
There's
so
many
questions
one
can
ask.
I've
learned
that
there's
this
fascinating
sort
of
general
narrative
that
affects
or
applies
to
a
lot
of
my
patients
with
neurodiversity.
In
this
case,
as
I
speak
it,
I'm
going
to
use
ADHD,
but
you
could
just
as
easily
sub
autism
or
other

Defining Disordered Eating Versus Diagnosis

SPEAKER_01
25:28

subclinical
neurodiversity
here.
So
I'm
going
to
also
use
it,
use
a
girl
model
because
I
think
that
they
are
the
ones
who
are
the
most
missed
in
this.
So
let's
say
that
there's
a
little
girl
and
she
knows
that
she's
pretty
bright.
She
might
be
unusual
bright,
not
necessarily
school
bright,
but
she
knows
she's
bright.
And
yet
what
she
finds
in
school
in
academic
settings
is
that
something
keeps
her
from
being
able
to
be
her
whole
self.
Maybe
it's
restlessness,
maybe
it's
distraction,
maybe
it's
her
mind
going
all
sorts
of
sparkling
places
at
once.
And
in
that
gap
between
knowing
she's
bright
and
yet
not
being
able
to
do
the
things
asked
of
her
in
a
neurotypical
system,
shame
starts
to
form.
And
as
this
shame
forms
and
influences
her
sense
of
self-esteem,
she
might
turn
to
other
things
where
she's
particularly
good.
Maybe
that's
athletics.
Because
maybe
on
the
PE
field,
she's
just
as
good,
if
not
better,
than
her
peers.
And
she's
like,
okay,
okay,
this
is
a
place
that
I
feel
like
I'm
doing
things
that
that
feel
good.
But
at
some
point,
she
may
accidentally
learn
that
if
she
eats
less,
her
brain
is
more
focused.
The
truth
is
that
restriction
does
make
people
less
creative,
joyful,
and
energetic.
And
as
such,
the
brain
noise
can
quiet
down.
And
when
that
brain
noise
quiet
down,
they
might
find
they're
better
at
school.
And
when
they
eat
more,
when
everyone's
like,
oh,
you'll
feel
so
much
better
when
you
eat
more,
they
feel
worse
because
their
thoughts
and
emotions
feel
so
big.
And
of
course,
feeling
big
in
your
thoughts
and
emotions
can
easily
translate
into
feeling
big
in
your
body
in
our
society.
And
so
they're
sort
of
the
more
the
seeds
of
the
more
classic
eating
disorder
can
be
sown.
But
what
you
find
is
that
this
person
can
end
up
getting
labeled
as
having
an
eating
disorder.
When
sure,
there
are
behaviors
and
there's
malnutrition
that
looks
like
that,
but
we're
failing
to
address
the
actual
underlying
situation.
So
when
you
just
have
a
young
person
like
that,
a
young
person
could
be,
of
course,
any
age
here,
but
usually
the
first
relationship
with
some
kind
of
treatment
is
in
adolescents
or
one's
20s.
And
you
immediately
feel
like
a
failure
in
recovery
because
everyone
says
you're
going
to
feel
better
and
you
feel
worse.
So
then
you
have
that
shame
piece,
that
self-esteem
piece
where
you're
like,
apparently
the
only
thing
I'm
good
at
is
like
restricting.
I
don't
know.
This
is
not
really
working
that
well
for
me.
And
when
we
finally
say,
now
hold
on
a
second,
let's
talk
about
how
you
feel
worse.
You
just
told
me
you
feel
worse
at
the
end
of
each
day.
You
might
be
able
to
kind
of
hang
in
there,
but
at
the
end
of
the
day,
you
are
doing
behaviors
that
you
know
are
incongruent
with
what
you
want
for
yourself,
but
you
feel
totally
out
of
control
to
manage
them.
And
you
feel
so
distanced
from
yourself,
but
you
feel
profoundly
exhausted
and
overwhelmed,
but
everyone's
asking
you
to
just
do
things
on
a
certain
schedule.
And
you
say,
you
know,
this
might
be
autism,
this
might
be
ADHD.
What
if
we
treated
these?
For
ADHD,
I
use
medications,
if
the
person,
of
course,
consents
and
wishes
to.
And
some
are
like,
wait
a
minute,
in
someone
with
a
restrictive
eating
disorder,
you
would
use
stimulants
that
affect
the
appetite?
You
say,
Yeah.
In
whose
world
is
anorexia
or
atypical
anorexia
an
appetite
problem?

SPEAKER_00
29:00

Right.

SPEAKER_01
29:01

It
isn't.
This
is
a
complex
biopsychosocial
disorder.
And
when
you
do
find
the
right
medicine
combo
when
it
comes
to
ADHD,
for
instance,
oh
my
gosh,
people
are
like,
wait
a
minute,
I
can
meal
plan,
I
can
focus
on
things
in
a
way
that
feels
gentle
and
authentic.
I
can
interact
with
people
more
comfortably,
and
I
don't
need
to
use
food
restriction
or
caffeine
to
self-medicate
here.
And
then
on
the
other
side,
when
you
say
behaviorally,
what
if
we
were
to
be
way
more
thoughtful
about
the
holistic
picture
here?
For
instance,
to
soothe
your
nervous
system,
do
you
have
a
bouncy
ball
or
a
rocker
or
a
glider
or
a
swing?
Because
those
repetitive
movements
can
be
so
settling
for
that
different
neurosystem.
And
if
you
could
do
that
for
half
an
hour,
a
couple
of
times
a
day,
would
you
find
yourself
Feeling
less
burned
out,
less
overwhelmed.
It's
this
slow,
holistic
process.
And
people
feel
seen
because
they're
finally
like,
thank
you.
I'm
not
built
like
everybody
else.
I
don't
want
a
plan
that
works
for
everybody
else.
Meet
me
where
I
am.

SPEAKER_00
30:17

Thank
you
very
much.
Yeah.
You
know,

Neurodiversity, ADHD, And Food

SPEAKER_00
30:20

and
I
I
feel
this
like
I
feel
like
you're
explaining
my
whole
childhood
in
a
nutshell,
you
know,
and
I've
worked
a
lot
through
that.
And
I
think
a
lot
of
it
came,
we
look
at,
you
know,
familial
tendencies
as
well,
the
way
they
speak
into
that,
the
way
you
see
your
parents.
And
this
is
something
I'm
very
careful
about
with
my
kids
is
like,
how
do
I
present
myself?
Do
I
present
myself
as
something's
flawed
within
me,
or
do
I
present
myself
as
I'm
doing
the
best
for
my
body
and
for
my
health?
Because
that
is
something
that
as
a
kid,
you
when
you
hear
that
something's
wrong
with
your
parents
and
they
are
on
a
diet
or
they're,
you
know,
doing
all
this
or
all
that,
it
changes
the
way
you
see
yourself.
When
you're
already
neurodivergent,
that
like
exponentially
increases
that,
you
know,
so
things
start
being
a
little
bit
more
challenging
to
walk
through
the
day-to-day.
And
so
that's
something
that
I've
always
been
very
cognizant
of
as
a
parent,
as
saying,
I
you
know,
not
one
size
all
fits
all
for
all
of
us,
but
let's
fuel
when
we
can,
how
we
can,
what
suits
us
in
a
good
way,
you
know,
and
and
being
kind
to
ourselves.
So
I
always
tell
my
girls,
Are
you
being
kind
to
your
body?
Oh,
because
is
that
kind,
you
know,
because
sometimes
they'll
say
something
about
themselves
because
they
hear
it
from
other
kids
a
lot
of
times.
And
I
was
like,
Was
that
kind
to
your
body?
Oh
no,
because
I
don't
want
them
to
have
that
negative
association,
not
only
with
their
body,
but
with
food.
And
that's
we,
you
know,
that's
one
of
the
things
that
I've
worked
really,
really
hard
on
with
them.
But
is
this
does
this
correlate
at
all
with
things
like
RFID,
things
that
I
mean,
I
that's
what
I
think
of
because
you
get
the
textural
things,
you
get
the
fear,
all
of
those
things.
Is
there
a
correlation
with
that?
Yeah.

SPEAKER_01
32:07

Huge.
There's
a
huge
correlation.
So
RFID
is
avoidant
restrictive
food
intake
disorder.
It's
one
of
the
formal
eating
disorder
diagnoses,
and
it
comes
in
roughly
three
flavors,
but
really
the
three
different
versions
of
it
do
overlap
a
lot.
You
can
have
people
who
just
don't
think
to
eat.
You
can
have
people
who
are
disgusted
by
textures
or
um
or
tastes,
and
you
can
have
people
who've
had
a
very
fearsome
reaction.
That
could
be
a
choking
episode
and
now
they're
afraid
to
swallow
because
they
don't
want
to
choke
again,
or
they've
had
a
vomiting
episode
and
they're
afraid
to
eat
because
they're
afraid
of
vomiting,
or
it
could
be
people
whose
tummies
hurt
or
whose
bodies
hurt,
or
who
get
brain
fog
every
time
they
eat,
or
rashes
every
time
they
eat,
or
joint
pains
every
time
they
eat.
And
so
all
three
of
those
can
end
up
in
a
gamesh
where
somebody
basically
doesn't
nourish
enough,
regardless
of
what
their
body
shape
and
size
is,
and
they
have
medical
malnutrition,
essentially,
that
doesn't
emerge
primarily
from
an
I
want
to
change
my
body
perspective,
but
from
this
negative
conditioning
relationship
with
food.
And
the
rates
of
ADHD
and
autism
in
those
with
RFID
are
sky
high.

SPEAKER_00
33:24

I
believe
it.
100%
believe
that.

SPEAKER_01
33:27

And
this
can
be
helped.
You
know,
we
don't
want
to
quote
unquote
fix
the,
as
some
call
it,
neurospiciness
of
our
wonderful
patients.
We
want
to
help
them
live
in
the
world
in
ways
that
feel
like
it
honors
exactly
who
they
are.
But
what
we
can
fix
is
the
ability
to
fuel
themselves
adequately.

unknown
33:46

Yeah.

SPEAKER_01
33:46

The
eating
disorder
field
is
just
starting
to
recognize
that
we
haven't
been
welcoming
in
those
who
are
neurodiverse
for
a
really
long
time.
Because
historically,
dietitians,
for
instance,
were
taught,
oh,
when
someone's
really
recovered,
they
can
eat
a
wide
variety
of
foods
at
any
hour
of
the
day
in
any
quantity
necessary.
And
so
they
push
people,
okay,
time
to
increase
food
diversity.
But
the
truth
is
that
if
someone
is
neurodiverse
and
they
say,
Yeah,
if
you
had
a
magic
wand,
I'd
be
certainly
very
happy
to
be
able
to
eat
anything
at
any
time
and
have
no
problem
with
it.
If
the
patient
says,
I
am
content
being
able
to
eat
these
six
to
10
foods,
not
really
changing
brands
that
much,
but
I
know
I'm
getting
in
the
essential
nutrition
that
I
need,
I'm
meeting
my
energy
needs,
I
feel
better
than
I
have
in
years.
Then
what
I
say
is,
there
is
no
reason
to
push
you
beyond
that
unless
you
tell
me
that
you
would
like
to.
So
it's
just
it's
a
much
more
flexible
and
responsive
way
of
thinking
about
eating
disorder
recovery.

unknown
34:56

Yeah.

SPEAKER_01
34:56

So
we're
not
trying
to
change
the
underlying
beautiful
differences
of
the
human,
but
we
do
want
to
help
them
nourish
their
bodies
for
what
they
want
to
do
in
the
world
and
for
their
wellness.
And
that's,
I
think,
when
it
is
really
reasonable
to
start
reaching
out
for
more
help.
That
could
be
a
local
dietitian
or
therapist
who
has
ARPID
experience.

SPEAKER_02
35:18

Yeah.

SPEAKER_01
35:19

I
often
will
suggest
that
people
look
at
the
lovely
combination
of
Googling,
you
know,
dietitian,
neurodiversity,
RFID,
or
neurodiversity,
irritable
bowel
syndrome,
eating
disorder,
and
see
who
comes
up
because
the
folks
who
do
this
work
love
it,
like
my
partners
and
I
do.
And
that's
where
you
want
yourself
or
your
loved
one
is
for
someone
to
be
like,
oh,
I
simply
adore
working
with
people
like
you.
Not
like,
oh
no,
not
another
one
of
these.

SPEAKER_00
35:49

Exactly.
And
that's
one
of
the
things,
you
know,
I
always
tell
people
is
like,
find
a
really
good
care
team
that
really
truly
cares
about
you.
It's
a
multidisciplinary
approach.
And
we
we
say
this
all
the
time,
not
just
for
endometriosis,
but
everything.
Like,
if
you
have
a
good,
solid
care
team
that
will
work
together,
your
outcomes
are
going
to
be
so
much
better
in
general.
Like,
life
would
be
a
little
bit
easier,
maybe,
you
know,
and
and
you're
not
adding
trauma
to
that.
What
are
some
risks
for
people
that

ARFID Explained And Supportive Care

SPEAKER_00
36:20

have,
you
know,
RFIT
or
are
neurodivergent
or
have
a
complication
or
a
complicated
relationship
with
food?
What
are
some
medical
risks
associated
with
those
undiagnosed
or
noticed
people?
Because
I
know
a
lot
of
people
in
the
endometriosis
community,
we
have
a
lot
of
these
challenges,
and
then
we
go
to
have
surgery
or,
you
know,
a
slew
of
other
things.
But
what
are
some
of
the
biggest
risks
in
not
assessing
these
things?

SPEAKER_01
36:52

Yeah,
that's
such
a
good
question.
One
of
the
interesting
tricky
pieces
to
this
in
a
medical
system
so
focused
on
what
you
can
measure
is
that
a
lot
of
these
folks,
even
if
they
go
to
a
really
nice
medical
practitioner,
will
still
fly
under
the
radar
because
their
weight
is
not
notably
one
direction
or
another.
Their
blood
tests
are
totally
normal,
their
vitals
look
good,
and
they
sort
of
leave
with
this
sense
of,
well,
I'm
I'm
glad
those
are
good.
I'm
I'm
happy
about
that,
but
I
sort
of
don't
feel
like
I've
been
seen.
I
sort
of
feel
like
something's
been
left
on
the
table
here.
And
the
truth
is,
that's
why,
you
know,
when
you
have
the
opportunity
to
talk
at
greater
length
with
someone
and
really
tell
the
story
of
your
body,
that's
when
things
start
to
emerge.
So
bodies
respond
in
knowable
ways
to
undernutrition.
And
as
I
said
earlier,
that's
because
humans
evolved
to
spare
ourselves
from
death
by
starvation.
And
during
the
millennia
in
which
we
were
creating
all
of
our
best
physiologic
pathways,
most
of
our
ancestors
were
experiencing
want,
not
plenty.
So
when
someone
is
inadequately
nourished,
and
this
doesn't
mean
that
they're
in
a
dangerous
state
yet
necessarily,
but
it
does
mean
that
they
can
be
like,
they
might
notice
certain
things,
like
their
hands
and
feet
are
always
cold,
or
they
themselves
are
always
chilly.
Now,
they
could
have
a
family
history
of
Ray
nodes
and
their
fingers
turn
bright
white
in
the
cold.
That's
a
different
process.
But
when
people
aren't
nourished
enough
over
time,
their
body
actually
decreases
blood
flow
to
their
arms
and
legs
and
hands
and
feet
so
that
it
just
doesn't
lose
heat
because
it's
trying
to
spare
calories.
Similarly,
they
may
always
feel
chilly
and
be
wanting
to
put
on
layers
and
hold
hot
mugs
of
tea.
And
this
is
our
very
clever,
what
I
call
cave
person
brains,
way
of
saying,
I'm
not
gonna
burn
calories
to
keep
you
warm.
We
don't
have
enough.
You
go
find
some
warm
things
to
put
on.
And
so
that
creates
that
sense
of
chilliness.
They
may
find
that
they
get
full
early.
That's
that
gastroparesis,
that
slowed
digestive
tract
due
to
undernutrition.
They
might
find
that
their
periods
get
unusual.
They
might
go
away,
they
might
happen
only
every
so
often.
And
I
know
that
in
the
endo
world,
well,
I
don't
know
enough
about
it.
I
know
that
periods
are
a
hot,
hot,
hot
topic.
Yeah.
And
so
it's
actually
possible
that
if
someone
is
malnourished
to
the
point
where
they're
not
menstruating,
that
really
feels
like
a
relief
for
their
endo.
And
they
do
not
want
that
period
to
come
back.
So
it
might
be
motivation
to
stay
a
little
malnourished
because,
again,
we're
self-medicating
something
else.
And
so,
like,
the
provider
has
to
be
really
respectful
of
that.
They
can't
be
like,
oh,
great
news.
When
you
nourish
again,
your
period
will
come
back.
Everyone's
gonna
be
so
psyched.
And
they're
like,
I
am
never
gonna
see
you
again.

SPEAKER_02
39:48

Right.

SPEAKER_01
39:49

Because
you
have
missed
the
point
so
thoroughly.
So
you've
got
to
be
really
sensitive
to
like
what
it
means
to
restore
quote
unquote
normal
function
and
how
somebody
might
engage
with
that.
But
also
one's
brain
function
changes
when
you're
undernourished.
Undernourished
brains
are
less
creative,
less
joyful,
less
playful.
They
get
very
focused,
they
tend
to
think
about
food
a
lot,
they
are
not
flexible.
They
may
find
that
it's
really
scary
to
do
something
spontaneous.
Because
our
ancestors
and
also
just
mammals
in
general,
when
they
are
starved,
they're
not
looking
to
be
relational
or
playful
or
tumble
around.
They're
just
like
food,
food,
food,
food,
food.
And
so
people
might
say,
you
know,
I'm
more
isolated.
I'm
having
a
harder
time
being
in
connection
with
my
family,
my
loved
ones,
my
kids,
my
partner,
my
parents.
They
may
find
it's
harder
to
concentrate.
You
have
to
read
the
same
thing
five
times
just
to
slurp
it
into
your
brain
when
you're
used
to
learning
things
faster.
So
there's
a
lot
of
little
tells.
Obviously,
when
malnutrition
becomes
more
advanced,
there's
a
lot
of
dangerous
medical
stuff
that
can
happen.
But
on
the
whole,
we're
talking
about
the
huge
number
of
humans
who
live

Subtle Signs Of Undernutrition

SPEAKER_01
41:10

a
little
malnourished
all
the
time
and
just
don't
have
quite
the
spark
of
life
that
they
otherwise
could
if
someone
could
properly
support
them
and
be
able
to
nourish
in
a
way
that
doesn't
hurt
them.

SPEAKER_00
41:25

Yeah.
That's
key
right
there.
Not
hurt
them.
Nourishing.
I
feel
like
this
is
not
just
food.
This
is
mental,
emotional,
like
it
all
ties
in
together.
Like
it's
all
one
big
picture.
It's
not
as
it's
not
linear
either.
I
feel
like
that
is
one
thing
that
I
have
learned
just
living
with
chronic
illness
and
exploring
it
more,
talking
to
others
who
live
with
it.
It's
not
linear.
It's
it's
very
up
and
down,
very
circular.
It's
very,
you
know,
it
it
ties
into
grief.
It
ties
into
all
of
these
other
things
that
we
process
and
go
through.
But
what
does
recovery
look
like
for
these
types
of
people
who
have
chronic
illness
that
isn't
going
away?
How
do
you
define
healing
in
that
context
for
these
people?
I
love
that.

SPEAKER_01
42:17

So
we
see
all
sorts
of
folks
in
our
clinic,
and
we
have
a
large
population
of
those
with
complex
chronic
illness,
which
requires
its
very
own
loving,
compassionate
take
because
oh
my
gosh,
so
much
effort
goes
into
just
getting
up
and
living
life
on
a
daily
basis
in
a
way
that
those
who
don't
experience
it
can't
begin
to
understand.
So
I
would
say
that
first,
recovery
looks
like
what
the
patient
says
it
looks
like.
What
would
it
look
like
for
you?
What
would
progress
look
like
and
feel
like
to
you?
Because
I'm
gonna
try
not
to
impose
my
vision
of
it.
I
would
rather
hear
from
them
first,
because
then
we
can
go
in
that
particular
direction.
If
they're
like,
I
literally
have
no
idea,
I'm
so
exhausted
and
overwhelmed
and
completely
battered
down
that
I
can't
even
begin
to
express
that.
What
do
you
think?
I'm
like,
okay,
well,
maybe
it
would
mean
feeling
like
less
of
a
mystery.
Anyone
who's
had
complex
chronic
illness
knows
that
being
a
mystery
in
the
medical
system
is
dangerous.
Yeah.
You're
gonna
get
tests
that
you
didn't
need
that
may
cause
harm.
You're
gonna
get
diagnoses
that
aren't
right,
you're
gonna
get
medications
that
were
sort
of
borderline-ish
and
and
were
not
helpful
or
or
were
harmful.
And
so
it's
scary
to
be
a
mystery.

SPEAKER_00
43:39

Yeah.

SPEAKER_01
43:39

It
also
just
feels
scary
when
nothing
seems
to
make
sense.
You
know,
a
lot
of
people
have
incredible
inner
strength
when
they're
like,
I
know
what
to
expect
and
I
know
how
to
bear
it.
But
when
something
comes
out
of
seemingly
nowhere
and
just
clobbers
you,
that
is
terrifying.
And
it
telescopes
your
life
back
down
into
this
little
tiny
thing
where
you're
just
kind
of
waiting
for
the
next
bad
thing
to
hit
you.

SPEAKER_00
44:04

Yes.

SPEAKER_01
44:05

So
what
I
like
to
tell
my
patients
is,
and
goodness
knows,
not
always,
but
a
lot
of
the
time
when
they
tell
us
their
full
story,
and
I
was
an
English
major,
so
I
really
like
a
full
story.
We
can
tell
them
authentically,
you
make
sense
to
me.
And
just
like
hearing
that
from
a
medical
provider,
instead
of
having
that
sort
of
like,
I
have
no
idea,
this
makes
no
sense,
and
now
I'm
about
to
reject
you
in
some
form,
which
like
perpetuates
the
medical
trauma,
just
to
be
like,
yeah,
you
make
sense
to
me.
This,
this,
and
this
make
a
lot
of
sense
to
me.
Oftentimes,
mast
cell
activation
syndrome
is
one
of
those
sense-making
diagnoses.
But
then
when
you
say
you
make
sense
to
me,
you
might
say,
okay,
this
is
gonna
be
a
long-term
load,
we're
gonna
walk
together.
But
I
have
some
ideas
about
how
to
ease
the
suffering.
So,
first,
you
make
sense
to
me.
Second,
can
we
ease
the
suffering?
Can
we
do
that
behaviorally,
nutritionally,
with
medications,
with
other
alternative
therapies?
And
so
the
second
thing
is
easing
the
suffering.
The
third
thing
is
knowing
that
you
have
someone
who
is
going
to
loyally
walk
next
to
you
unconditionally.

SPEAKER_00
45:21

Yeah.

SPEAKER_01
45:22

And
I'll
often
say
to
my
patients,
you
know,
whom
even
whom
I've
known
for
a
decade,
let's
just
go
through
everything
you're
feeling
right
now
because
you
might
not
feel
comfortable
doing
that
with
your
family
because
you
know
on
some
level
it
pains
them
to
hear
that
you're
like
suffering
in
all
of
these
detailed
ways.
And
of
course
they
love
you
and
they
want
to
hear
it,
but
you
don't
maybe
necessarily
want
to
tell
them
every
single
week.
But
it's
lonely
to
sit
with
those
symptoms.
But,
you
know,
in
this
really
healthy
context,
I
can
be
like,
I
care
tremendously
about
you,
and
it
will
not
wound
me
to
hear
of
your
suffering.
So
let
me
have
it.
Tell
me
all
of
the
shit
that's
going
awry

Redefining Recovery With Chronic Illness

SPEAKER_01
46:02

for
you
this
week.
And
just
having
a
space
where
you
can
name
what's
going
on
in
your
body
is
its
own
therapeutic
positive.

SPEAKER_00
46:11

I
love
that
so
much.
I
love
that
for
the
simple
fact
that
it's
not
only
validating,
but
it's
giving
room
and
giving
space
for
healing.
Like
that
is
huge
for
so
many
people,
especially
medically
complex
people
who
are
struggling
day
in
and
day
out
for
people
just
to
believe
them
and
to
not
feel
like
they
are
being
a
burden
to
someone.
Yes.
That's
huge.
Yeah.

SPEAKER_01
46:41

So
I
think
that's
sort
of
what
healing
looks
like.
And
alongside
it,
usually
with
our
patients,
we're
working
on
nutritional
strategies
as
well
to
help
nourish
the
body
tenderly
with
what
it
needs
so
that
it
can
keep
getting
up
and
fighting
these
complex
fights
on
a
daily
basis.

SPEAKER_00
46:58

What
can
those
who
love
us,
who
want
to
support
us,
what
can
they
do
to
help
us?
Because
this
is,
again,
we
don't
want
to
feel
like
a
burden
and
we
and
it,
we
know
it's
hard
on
them,
but
what
can
they
do
to
support
us
through
this
process?

SPEAKER_01
47:13

The
best
first
thing
that
I
always
think
of
is
ask.
So
if
it's
my
daughter,
what
would
be
the
most
helpful
thing
for
me
to
do
in
this
circumstance?
And,
you
know,
just
just
to
ask,
just
to
give
her
that
autonomy,
to
give
her
that
voice,
I
think
is
a
good
first
step.
And
again,
many
people
may
be
so
overwhelmed
that
they're
like,
I
have
literally
no
idea.
I
don't
know.
Um
but
probably
it
comes
down
to
don't
feel
you
need
to
fix
your
loved
one
because
you
won't
be
able
to.
If
love
could
make
this
complex
medical
stuff
go
away,
they
never
would
have
been
sick
in
the
first
place.
And
and
as
long
as
you,
as
long
as
let's
just
say
this
is
a
parent
role
with
a
child
or
any
loved
one,
as
long
as
you
take
yourself
off
the
hook
for
thinking
you're
responsible
for
fixing
them.
And
that
includes,
by
the
way,
not
haranguing
them
about
behaviors
the
parent
thinks
the
kid
could
do
to
make
them
feel
better.
Well,
if
you
hadn't
stayed
up
so
late
the
other
night,
you
would
have
gotten
the
good
night's
sleep
that
you
know
makes
your
tummy
feel
better.
Nope.
Nope,
respectfully,
nope,
nope,
nope.
Do
not
sort
of
say
the
old,
I
told
you
so.
Why
didn't
you
do
this
better?
I
think
the
best
thing
you
can
say
is,
I'm
listening.

unknown
48:24

Yeah.

SPEAKER_01
48:24

This
sounds
so
hard.
I
love
you
so
much,
and
I'm
here
to
support
you
however
I
can.
I
think
the
reiteration
of
that
again
and
again
makes
the
relational
bond
strong
and
glowing,
and
maybe
a
great
reassurance
for
someone
to
hear
that
you
can
suffer
as
much
as
you
suffer,
and
I'm
gonna
be
here
to
love
you.
But
that
is
one
of
the
other
reasons
why,
when
geography
and
resources,
all
of
which
are
complicated,
allow
for
a
good
multidisciplinary
team.
That
in
particular
allows
a
parent
to
say,
instead
of,
oh,
you
ate
that
birthday
cake
yesterday,
of
course
your
tummy
hurts
today,
you
know.
I
mean,
I'm
sorry
you
hurt,
but
you
could
have
done
it
better.
Instead,
they
can
be
like,
I
love
you
so,
so
much.
And
like,
let's,
you
know,
do
you
want
to
cuddle?
Do
you
want
to
talk
about
it?
Sounds
like
it's
gonna
be
great
stuff
to
talk
about
in
detail
with
your
dietitian
tomorrow.
You
know,
and
just
allow
the
sort
of
advice
piece
to
be
elsewhere
and
just
allow
the
unconditional
love,
support,
and
positive
regard
to
exist
in
that
love
relationship.

SPEAKER_00
49:33

Yeah,
it's
like
you're
still
the
parent,
but
you
don't
have
to
solve
all
the
problems
of
the
day.
You
get
to
be
the
parent,
you
get
to
love,
you
get
to
nurture
without
creating
a
barrier
to
that.

SPEAKER_01
49:45

And
the
parents,
to
be
clear,
don't
think
that
they're
being
houndy
or
or
they're
just
they
want
their
loved
one
to
feel
better.
And
when
they
see,
this
is
especially
true
perhaps
with
teenagers
and
young
adults
who
have
complex
chronic
illness,
and
they
just
may
not
have
all
of
the
functions
ready
to
perfectly
care
for
themselves
on
a
daily
basis.
You
know,
that
is
life,
but
it
actually
diffuses
the
parents'
belief
that
they've
got
to
rein
in
their
kids'
perfect
behavior,
which
is
a
whole
complexity
in
and
of
itself,
and
instead
can
just
stick
with
validation,
sympathy,
support.
And
that
way
the
kid
can
work
with
somebody
who's
a
professional
on,
oh
gosh,
you
know
what?
It
turns
out
that
when
I
drink
caffeine,
my
mast
cell
really
does
flare
and
my
tummy
feels
awful.
So
even
if
I'm
exhausted,
I'm
gonna
use
some
other
techniques
that
might
make
me
feel
better.
But
it's
not
gonna
come
from
the
parent
from
whom
it
may
be
hard
to
hear
that.
And
the
parent
gets
to
do
what
they
know
how
to
do
best,
which
is
to
offer
love.

SPEAKER_00
50:44

Yeah,
I
love
that.
I
could
we
could
go
on
and
on
and
on
for
probably
hours,
but
for
the
last
minute
or
so,
these
are
this
has
all
been
so
good
and
educational.
And
I
probably
will
have
so
many
more
questions
moving
forward,
and
maybe
sometime
we
can
do
another
episode.
But
what
I
would
like
to
do
this
last
minute
or
so
is
get
to
give
you
the
opportunity
as
a
provider
who
doesn't
work
necessarily
specifically
in

How Loved Ones Can Truly Help

SPEAKER_00
51:10

the
endometriosis
space
to
ask
me
as
a
patient
advocate
some
burning
questions
that
you
might
have,
which
could
help
others
along
the
way.
So
I'm
gonna
open
this
up
to
you.
And
if
I
don't
know
the
answer,
I
will
say
that.
Again,
I'm
not
an
expert.
I
am
an
expert
patient.
That's
probably
the
best
that
I
can
do.
But
do
you
have
any
burning
questions
that
you
would
love
to
ask
me?
My
gosh,
this
is
such
an
opportunity.

SPEAKER_01
51:36

Yes,
please.
Okay.
First
one
I
have
is
what
would
have
been
the
most
helpful
questions
a
doctor
could
have
asked
you
early
on?
And
what
would
have
been,
as
you
now
know
your
body
so
much
better,
some
of
the
most
helpful
answers
someone
could
have
given
you
earlier?

SPEAKER_00
51:56

I
love
that.
I
wish
they
would
have
honestly
just
asked
me
from
head
to
toe
what
I
was
going
through.
Because
I
think
that
one
of
the
things
that
many
of
us
experience
is
we
come
in
with
a
symptom,
but
that
symptom
doesn't
necessarily
point
to
actually
what's
going
on.
It's
actually
whole
body.
So
it
started
maybe,
you
know,
with
hip
pain
and
then
back
pain,
and
then
it
just
got
a
little
bit
worse
during
our
cycle.
So
now
we
have,
you
know,
the
period
poops
is,
you
know,
the
best
way
I
can
explain
that.
And
but
we
also
had
these
migraines.
So
just
I
wish
someone
would
have
said,
walk
me
through
your
body.
Because
I
do
think
there's
a
roadmap.
And
if
we
sit
back
and
listen,
and
it
and
it
doesn't
have
to
be
in-depth
sometimes,
it
can
be
just
the
detailed
overview
for
a
doctor
to
say,
you
know,
you
said
something
about
your
GI
system.
Can
you
go
into
that
just
a
little
bit
more
so
I
can
understand
what
the
feeling
is?
Because
I
do
think
that
they
don't
have
to
be
experts
in
every
field,
but
to
get
a
good
picture
of
how
your
body's
functioning
as
one
would
have
been
really,
really,
really
helpful.
Instead
of
hearing,
well,
I
don't
know
anything
about
that,
but
I
think
it's
this,
you
know,
diagnosing
me
without
knowing
the
whole
picture
was
not
necessarily
ideal.
And
then
for
any
provider,
any
provider,
if
you
don't
know
simple
things
saying,
you
know,
I
don't
know
what's
going
on
with
you.
I
believe
you,
and
I
believe
there
is
something
going
on.
I
am
just
not
sure
what
it
is,
but
let's
figure
this
out
together.
You're
not
alone.
That
is
powerful
because
what
you
did
in
that
frame
is
saying,
someone's
on
my
side.
You're
validating
that
you're
in
pain,
even
though
it
may
be
invisible
to
most,
but
then
you're
also
validating
that
they're
not
alone.
I
think
that's
huge,
but
that
is
very
rarely
ever
spoken
to
patients
in
that
so
beautiful
and
so
reinforcing.

SPEAKER_01
54:00

Thank
you
so
much.
Is
there
an
alternative
non-medical
intervention
or
or
behavior
that
you
have
found
was
most
valuable
for
your
complex
illness?

SPEAKER_00
54:16

I
think
there's
a
lot
of
ways
that
we
can
help
support
our
bodies.
And
I
think
everyone
is
going
to
be
very
different.
Acupuncture
and
massage
are
super
helpful.
And
then
also,
really,
you
know,
the
more
I'm
learning
about
the
vagal
nerve
stimulation
and
knowing
how
to
get
yourself
out
of
that
fight
or
flight
into
rest
and
digest,
I
think
has
been
more
helpful
for
me
in
navigating
not
necessarily
the
endometriosis,
but
mast
cell
or
my
EDS
symptoms,
or
you
know,
becoming
less
stressed
and
holding
on
to
all
of
those
things
has
really
been
key
for
me
being
able
to
move
forward
in
a
healthy
manner.
But
then
also
I
will
say
LDN
has
been
a
game
changer
for
me.
I
love,
love,
love
LDN.
It's
not
for
everyone,
but
for
me,
in
a
pretty
harmless
way,
it's
been
a
huge
help.
So
that's
like
pharmaceutical-wise,
that's
been
super
helpful.
And
then
having
a
very,
very
strong
support
system
of
people
who
know
what
you
are
walking
through
to
walk
with
you.
So,
you
know,
we
have
the
nonprofit,
we
have
monthly
support
gatherings,
and
it's
so
powerful
to
sit
in
the
same
room
with
other
people
who
are
going
through
similar
experiences
to
be
able
to
understand.
I
just
did
not
feel
good
today,
you
guys.
I'm
so
sorry.
It's
okay.
So
that
has
been
so
helpful
for
symptom
management
as
well,
oddly
enough,
because
you
feel
validated.
Absolutely.

SPEAKER_01
55:52

I
think
loneliness
and
rejection
worsen
every
possible
body
symptom
you
can
have.
And
that's
such
a
helpful
answer
for
me
to
hear.
Thank
you
so
much
for
the
generosity
of
your
wisdom
on
those.

SPEAKER_00
56:03

Oh
my
gosh.
I'm
anytime
I'm
I
really
appreciate
your
wisdom
and
your
guidance
on
something
that
can
be
so
taboo
for
so
many
and
so
challenging
to
hear,
and
for
your
empathy
that
goes
into
that
and
just
the
way
that
you

Lightning Round: Patient Advocate Insights

SPEAKER_00
56:20

it's
like
a
warm
hug
when
you
talk
about
this,
which
is
so
different
than
what
we
feel
most
times.

SPEAKER_01
56:27

Oh
my
gosh,
that
means
the
world
to
me.
Thank
you
so
much.
And
I'm
just
so
grateful
for
the
work
that
you're
doing
and
the
messages
that
you're
putting
out
there
so
that
you
do
create
this
community
so
that
people
can
feel
better,
feel
seen,
feel
held,
and
so
that
they're
not
mysteries.

SPEAKER_00
56:43

Yeah.
Yeah.
We
are
all
beautifully
created
humans
that
just
need
the
support.
That's
what
we
need.
And
I'm
thankful
to
have
you
in
our
corner
for
that
and
to
be
that
charger
for
us
to
give
us
some
life
that
we
that
we
need.
So
I
appreciate
everything
that
you're
doing.
Again,
you
can
check
out
Dr.
G.
What's
a
good
place
for
people
to
seek
you
out
and
learn
more
from
you?

SPEAKER_01
57:11

Yeah,
thanks,
absolutely.
So
online
we're
www.gaudianiclinic.com.
That's
G-A-U-D-I-A-N-I
Clinic
dot
com.
And
we're
on
the
socials
as
well.
We
try
to
really
bring
forth
content
that
is
always
weight-inclusive,
fat
positive,
that
talks
about
mast
cell
and
hypermobility
and
pots
and
the
ways
that
they
intersect
with
our
relationship
with
nutrition.
And
we've
got
blogs
and
and
all
of
those
fun
resources
as
well
on
the
website.

SPEAKER_00
57:42

You
could
you
do
such
a
great
work
with
educating.
And
then
Sick
Enough,
your
book,
they
can
find
anywhere.
Yeah,
that's
right.

SPEAKER_01
57:50

And
um,
I
recommend
they
wait
for
the
second
edition,
which
is
coming
out
in
December
of
2025,
because
um
I
really
feel
excited
about
what
it's
offering
folks.

SPEAKER_00
58:00

I'm
excited
to
read
it.
So
thank
you
so
much
again,
and
thank
you
all
for
sitting
with
us
today
at
the
table
and
being
part
of
this
conversation.
And
until
next
time,
continue
advocating
for
you
and
for
others.